Personal assistance, income and employment: the spinal injuries survey instrument (SISI) and its application in a sample of people with quadriplegia.

IntroductionOur aim was to ascertain what effect access to personal care package (PCP) has on the labour market activities of people who have a spinal cord injury (SCI). We developed a new instrument called the spinal injuries survey instrument (SISI). The SISI is a 35-item instrument, which contains items on health, education, employment, along with measures of personal assistance, mobility and psychological attribution style.Materials and methodsThe SISI was administered, with the Short Form 36 (SF-36) health status instrument, to 250 people with an SCI. The response rate was 72%. A retrospective, matched case-control sampling approach matched individuals who received a PCP, with a cohort who did not. The matching criteria included the site and severity of spinal lesion, age and gender.ResultsAlthough data on the reliability of the instrument are currently lacking, our empirical results are consistent with other studies: (1) mean annual health care costs (AUD$8741) are comparable with Walsh's estimates (2) SF-36 data support Kreuter's contention that mental health is resilient to SCI and (3) a post-injury employment rate of 29.7% corroborates Murphy et al. We present additional data describing income, educational attainment and family support.DiscussionOur discussion borrows a conceptualization of disability by Sen, that includes both an ‘earning handicap’ (an impediment to earn income) and a ‘conversion handicap’ (an impediment to the enjoyment of income). Our application of the SISI provides evidence of both. The labour income of people with quadriplegia is AUD$10 007 per annum, while diminished health status, increased out-of-pocket health expenditure and loss of time suggest a conversion handicap.Spinal Cord (2008) 46, 417–424; doi:10.1038/sj.sc.3102157; published online 8 January 2008 [ABSTRACT FROM AUTHOR]